Warrior for the Disabled : Brenda Premo Fought on the Front Line to Help Win Landmark Rights Bill

Brenda Premo--former teen-age "troublemaker," longtime activist and now troop commander in the disabled-rights movement--has an appointment on the South Lawn of the White House on Thursday morning.

She will be joining congressional leaders, administration officials and scores of other activists as President Bush signs the landmark Americans With Disabilities Act, a sweeping piece of legislation that protects the physically and mentally disabled from discrimination in jobs, transportation and public access.

As it was being passed overwhelmingly by both houses of Congress two weeks ago, the bill drew the highest praise from Bush and Capitol Hill leaders, who called it the "declaration of independence" for the disabled.

And Premo, like others who have relentlessly sought such legislation for years, admits to being just a little stunned as well as elated by it all.

"Believe me, we have come a long, long way to get here," said Premo, 38, sitting in her executive director's office at the Dayle McIntosh Center for the Disabled, an Anaheim-based service and advocacy organization run largely by the disabled.

Premo's credentials for attending the historic signing are more than appropriate.

An impassioned, outspoken advocate, she is a member of the National Council on Disability, the advisory panel appointed by the President that has been a driving force behind the rights legislation since it was first officially proposed to Congress in 1986.

As executive director of the McIntosh center, a privately operated organization funded with both public and private money, Premo will be playing a key local role in assuring that the new federal law's provisions--many of which are certain to be controversial--are carried out.

And like so many others with disabilities, Premo--who is legally blind, has albinism and who as a child was considered retarded--can tell stories of a life spent facing enormous odds and combating stigma, ignorance and isolation.

It is not surprising, then, that beneath all the euphoria and ceremonial flourishes of Thursday's White House signing, activists such as Premo still see a disturbing, even ominous, dichotomy in American society.

"On one hand, we have just passed a monumental bill that says people with disabilities have equal rights, equal protection," she said. "On the other hand, you still have situations where funds for the most crucial kinds of programs are being cut out from under the very people who are going to get those rights.

"It's like telling people, 'That's OK, we will provide just enough basic services to keep you alive, but we will give you nothing for your dignity, for your independence, for a true quality of life.' "

The latest example of such "disastrous cutbacks," Premo noted, is right here in California.

As a cost-cutting measure, Gov. George Deukmejian had proposed cutting from next year's budget $5.2 million in previously allocated funds for supporting 25 "independent living centers" for the disabled, the first such cut since the state first helped form the centers in 1979. (Negotiations between the governor and the Legislature are now at an impasse.)

Premo and other directors of the program believed such a cut would be devastating for the still relatively small network. Half of the centers would be closed, they said, and services would be drastically reduced at the others, including the Dayle McIntosh, which would face a 30% cut in its budget for next year.

Although the governor later announced that he was no longer proposing such a cut, the whole incident, Premo said, emphasized the precarious state of many existing programs for the disabled--and also the probable clashes ahead when new programs are established under the new federal law.

"The (rights) act is a landmark victory for us, no doubt about that. But," Premo added, sounding like someone already gearing up for the next battle, "obviously, we have yet to win the war."

Long before she formally enlisted in the disabled-rights movement, which she did in her 20s, Brenda Premo was fighting her own private war.

When she was a young girl, Premo said, "they kept me separated in special-education classes. They treated me like I was retarded, like they had nothing but the lowest of expectations for me. The thinking was that only they knew what was good for me." Premo was born with 10% vision because of her albinism and a damaged optic nerve. She is a Long Beach native who lived in various parts of Los Angeles and Orange Counties as she was growing up.

"My brains aren't in my eyes. Yet somehow, if you have a disability, they think of you only as someone who is so incapable, so helpless. But I wasn't going to lie down and give up, and say: 'OK, system, take care of me. You owe it to me,' " Premo said.